Do you take or have you taken LDN for ME/CFS? Can you help me? Please read on!
You may have heard of people taking LDN for ME/CFS. Are you one of those people? Has it worked well for you – well enough that you’d want others to know about it? Can you think of the one group of people that don’t know about LDN? - doctors! Why? Because there’s very little written about LDN in the medical journals. There are very few clinical trials of LDN in any disease and there isn’t a single case report in a medical journal of someone with ME/CFS improving when they take LDN! (Anecdotal reports on the web don’t count as far as doctors are concerned.) And until that changes, those of us on LDN will have real difficulties getting prescriptions for it from our doctors.
I have just started a Masters in Research degree at Manchester University, England, with the sole purpose of learning how to organize a clinical trial of LDN in ME/CFS. It will take me several years. But before I could set up a clinical trial, I have to convince the local Medical Ethics Committee that LDN is safe to use in ME/CFS, otherwise they won’t allow me to do the trial. So I must be able to show them some published work in a medical journal about LDN in people with ME/CFS. The first stage is to get some case reports published – that’s just an account of what happened to some people when they started LDN – how they improved, any side effects, what dose they now take etc.
I’m an ex-doctor and I’m one of the lucky people who has responded well to LDN. I was mainly house bound before I started LDN and I now have a full life – not quite 100% but not far off. I’m wanting to write my story up as a case report, but I need others to join me. The more people I write up in one go, the more likely it is to be accepted for publication. So, would you consider volunteering? If so, please get in touch. I particularly want to hear from you if your health has improved a lot on LDN. That may not be you, but someone you know who is back at work or has found a new hobby and not likely to read this – please ask them. Also, if you were on LDN and have now stopped it for any reason, I’d like to know how you are now compared to when you were on LDN.
Please remember, I am no longer a doctor, and can’t give advice about LDN, or suggest at this stage that anyone starts taking it – we need the clinical trials to show whether it works, and how effective it is.
But please – if you think you could help me – get in touch!